Taking a stand against tube-feeding crimes and negligence

Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health “care” system.

If you don’t believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children’s Hospital by weaning expert Markus Wilken, during his visit from Germany. This video is an invaluable resource, which I highly endorse, as you’ll see at the closing of this overdue rant.

Our tube feeding days are far behind us, yet memories haunt us. Like the time I inserted Stella’s nasogatric (NG) tube into her nose, only to have it come out her mouth, instead of going down to the base of her esophagus as planned. Of waking up every two hours to feed her at night, fumbling in the dark with a stethoscope and large plastic syringe in order to confirm correct placement of the tube before setting up the pump to run for 45 minutes–desperately trying to stay awake while it ran, so as to be able to respond in the event of a pump malfunction or choking incident. The blood that, after the first month of tube feeding, consistently encrusted the tube in her tiny nostril. And, in soul-crushing fashion, the bottles of outrageously expensive Elecare, not covered by insurance, that Stella triumphantly downed on occasion, only to re-emerge in projectile fashion thanks to tube-triggered gagging.

Crazily enough, none of these incidents were the turning point for me. None of them woke me up to the immediate need for the tube’s removal. Though I did often wonder how long this would go on, as there was no plan for weaning. I was doing what I was told because it was supposedly medically and therapeutically necessary. I have another mother to thank for my awakening–a mother who didn’t see such a need and whose child paid a huge price.

Back when Stella’s little baby face was accessorized by medical tape securing a thin but lengthy yellow NG tube, we made one of many trips to Seattle Children’s Hospital. This time for an abdominal ultrasound. In the waiting room, two women struck up conversations with me about, what else, Stella’s tube. “She looks so healthy,” said one, whose child also had feeding issues and was headed toward a tube. Then she asked the inevitable question: “Why does she have a tube?” I explained, and we commiserated about the misery of trying to feed a child who simply does not want to eat. The other, with empty eyes and a tired smile for Stella, commented along the lines of, “My son had an NG tube until he was five. Good luck. She looks great. I hope you get her off of it.” Suddenly, my stomach felt as though it were full of rocks. In that moment, I sank to a very dark place. But while down there, I resolved to never, ever let that happen to Stella. I decided to fight.

So, just to make this astounding fact clear, I’ll repeat it: I met a woman whose son lived with a nasogastric feeding tube until he was five years old. Five years of a thick tube through his nose (no doubt causing nasal ulceration), his esophagus irritated, the sphincters held open (encouraging reflux), food administered on some dietian’s strict schedule and chart regardless of what he thought or felt. It’s a perfect illustration of why I’m so angry. Really, really angry. I have been for a while.

I’m outraged at the treatment that many tube-fed children and babies are receiving from doctors and therapists. G tubes, the next step after NG tubes (if eating does not progress) and a much kinder solution in cases of long-term feeding, are not without problems. They require surgery, which when not done properly can cause extreme suffering and even when correctly inserted can contribute to excessive vomiting. I believe that there are many children with G tubes that do not actually need them, and that if physically able but still unwilling to eat, they should be given a chance to wean before surgery is considered. At the very least,  thoughtful, individualized approach should be taken by an interdisciplinary team of doctors, as opposed to the reckless, disorganized decision-making that is now widespread.

Based on my experience with Stella, I’m particularly concerned about those with long-term NG tubes, tubes meant only for short-term use. It’s not okay. Scientific evidence (which I will present in a later post) and common sense tell us that NG tubes cause extreme discomfort and difficulty (slowing of) swallowing. The frequent removal and reinsertion of this tube is traumatic and damaging for child and parent. No matter what kind of tube is used, a complete disconnect with hunger and extinguishing of the desire to eat is practically inevitable. The tube itself fuels eating refusal and aversion, long after the initial issues prompting the tube’s insertion have been addressed. (This is very different from children for whom tube weaning is not an option at all and long-term tube feeding a clear life-saver.) Families are plunged into despair, their lives shrunk down by the oppression of tube feeding (though, sadly, this comes to feel normal for many families), the incessant vomiting, the stunted growth that the tube was supposed to prevent, and the hopelessness that arises due an absence of a weaning plan. Or any plan for that matter. For most of these children, there is no way out. This is, with no exaggeration, a crime.

And then there is the so-called “therapy” provided to these children. When I hear stories of children being force fed, and there are a lot of them, I literally become sick to my stomach. It’s wrong. It’s a disgrace. Yet it’s happening at leading clinics and children’s hospitals across the country. One of the barbaric techniques used: Puree is shoved aggressively into toddlers’ unwilling mouths, which are then held shut for as long as it takes. As long as it takes for them to swallow–and it can take a very long time to swallow when you are terrified of food. What horror! Stella’s occupational therapist noted that some “graduates” of such programs later have to be desensitized after enduring such trauma, the process of learning to enjoy rather than fear food begins again but on even shakier ground. How can a brute-force approach possibly help a scared child discover the joy of eating? It can’t. If the child does eat, it’s not because they want to. It’s because they have no choice and no other way to make the torment stop. The children are sometimes called “obstinate” by therapists and parents who buy into the crazy, unbelievably misguided belief that kids are refusing to eat because they are, essentially, being manipulative little jerks. The children are blamed, their trauma and autonomy completely disregarded. Parents are pitted against children, forced to play coercive games. This is absolute insanity.

There are far better ways to wean children from tubes, to awaken their appetites, hearts, and minds. These methods are infinitely more effective and humane. They are based on respect and compassion, which every child needs and deserves! Beyond that, every child for whom it is safe (mainly, the many tube-fed kids whose initial issues are resolved) deserves to be given a chance to eat. For many families, weaning is never even discussed! Because the child is not eating orally. But why would they? Why would they suddenly enjoy eating when every three hours, formula is pumped directly into their stomach, sometimes only to come back up again due to nausea and rampant overfeeding? When Stella had her tube, our pediatrician said she’d just “turn it around.” As if by magic. That was never, ever going to happen.

I’ve been perusing blogs and boards of parents with tube-fed children and my goal has been to offer support whenever I think my experience with Stella could be relevant. It feels good to provide support and resources, to help bring about positive change based on such a negative experience. But I’m not sure I can do it anymore. There are too many heartbreaking stories of renowned hospitals directing parents to disregard their instincts and squash the dignity of their child. It’s overwhelming. I’ll start to type a reply to certain posts, ones that reveal that a child is being forced to eat in some fashion, only to delete it, because my thoughts are all over the place. My words too angry.  I wonder where to begin. How can I convince someone that the entire medical establishment is harming their child on a root level, rather than helping? There is too much ground to cover, too much fundamental education and changing of minds to do–more than can be conveyed in a comment box. I’m at a loss.

I have such compassion for the parents, yet feel such angst when I see the failure to question the clearly ineffective and detrimental status quo. You have to stand up for your child. No one else will. You have to call bullshit on doctors’ cavalier attitudes toward tube feeding, not to mention their lack of actual knowledge on the subject. You have to challenge therapists whose tactics perpetuate the feeding battle, rather than bringing it to a peaceful end.

But I know. I know these parents are ground down by the stress, loneliness, and sorrow that comes with not being able to nourish your own child—the nightmare that is tube feeding. I know from my own experience that some parents become so desperate that they no longer trust themselves and find themselves willing to follow whatever directions they’re given, perpetuating their own hell, despite the nagging voice inside that tells them it’s all wrong. Or who are tossed back and forth from one expert “opinion” to another, with no one ever offering a real plan for moving towards normalcy and health. Parents are victims of unnecessarily extended tube feeding as well, and the failure to recognize the deep trauma of both parent and child, and how it contributes to disordered feeding, is another gaping hole in the “care” received.

I have by now heard about, and even helped in some small way through this blog to bring about, dozens of successful tube weans. I know some children require tubes for survival. But many others are simply trapped with no visible exit. In particular, I am intimately familiar with three tube weaning success stories: that of my daughter Stella, and those of Zander and Heath, the children of women who have become dear friends. These amazing triumphs were achieved thanks to parental intuition, constant and fearless questioning, and plain old ignoring of bad medical advice, plus exhaustive research and the shaken but intact inner belief that if given a chance, “my child can eat.” These weans required a lot of belief and trust in the child, not the doctors. They required a process of “letting go.” This is hard to do, not only for parents, but for a broken health care system that insists on monitoring and controlling every milliliter pumped through the tube, in order to cover its ass, all while ignoring the impact on quality of life.

Thankfully, there is an alternative, explored in the video below. Upon viewing it, I cried. They weren’t happy tears in response to the wonderful, validating, rare, evidence-based wisdom on tube weaning that the video unveils. I bawled because the speaker, a child psychologist and tube weaning expert from Germany, describes a higher, enlightened quality of care given to children in his country—a standard and mentality that simply does not exist here. Unexpectedly, I was overwhelmed with grief. By and large, Stella did not receive the respectful, mindful, effective and individual care that she deserved. And thousands of children are needlessly suffering right now.

If you’re angry too, looking for a way out of tube feeding, or want to follow your desire to treat your child with more compassion during their feeding journey, please grab a cup of coffee and watch this eye-opening, heartening lecture given by child psychologist Markus Wilken. He has past, direct experience with the Graz method, which he’s incorporated into ongoing weaning and tube management work in hospitals and clinics in Germany. Astoundingly, Markus has successfully weaned a diverse set of over 400 children. Perhaps, within his presentation, you’ll find the encouragement you need to believe in yourself and your child. To live a tube-free life! You can do it. Your child can do it. It’s time to fight.

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Here’s the link (some find that removing the “mms” prefix is necessary for successful viewing):

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

Support and community for parents of tube-fed children

Trying to wean your child off of a tube? Bravo! You’ll find comfort, resources, and encouragement in this online support group:

Tube Fed Children Deserve to Eat

It’s a social network powered by Ning Grouply, with the purpose of “Connecting Parents of Children with Tube Feeding Issues.”  There you will find a wealth of information and wonderful people who are all going through (or have been through) your stressful situation!

Best of luck to you!

Behold: Tube weaning research and guidelines

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.

Meet Diego

Back in mid-November, when Stella’s NG tube was put into her cute nose and down into her then-hungry and confused tummy, I was understandably freaked out. I wondered if it was the right thing to do. I worried about how it would affect her. So I did the worst possible thing I could do. I turned to the internet for answers. What I found, mainly on message boards and on random, unofficial-looking “medical” websites, was horror story upon horror story about how NG tubes make feeding aversions worse. How they lead to complete oral aversions, make reflux worse and pave the way to surgically inserted g-tubes. I was so scared.

Rocio and Diego, bonding not long after his premature birth.

Rocio and her precious and miraculous Diego, bonding not long after his premature birth.

I did have the good sense to realize that the people most likely to turn to the web are those who, like myself at the time, are struggling. If things are going well with your child, or if you’ve overcome an issue and are no longer in it, you’re less motivated to go to the web and tell your story. You don’t need answers and support. You’re not desperate for any tidbit of information you can get. I knew that out in the real world, there were probably lots of babies who’d been on NG tubes for a short time and then resumed normal eating. Through my occupational therapist, I learned about the amazing Libby. And then, one night, through comments she left here on this blog, I met an incredible mother named Rocio and her son Diego.

That evening, Rocio did what I had done. She felt a rising sense of panic after reading terrible anecdotes about NG tubes online. She then came across Stella’s story and was encouraged to see that Stella was making progress with eating. Rocio and I began to communicate regularly via email. In a sense, it felt like we were in this together. This woman I had never met who understood everything I was going through and vice versa. We were going to get our babies off the tube. And no other outcome was acceptable. As scared as we were, we knew they could do it.

Rocio’s son Diego was born prematurely, at 28 5/7 weeks gestation. He was tube-fed from birth, first through his mouth, then, after graduating to “level 2” in the NICU, through his nose via a nasogastric (NG) tube, just like the one Stella had. As Rocio explained, Diego developed reflux while learning how to eat, which set him back. As in Stella’s case, the pain all but eliminated his desire to eat. After spending three months in the hospital, Rocio pushed to have Diego sent home, so that he could enjoy a more comfortable, cozy, non-medicalized environment. So, Rocio and her husband bravely learned how to maintain the NG tube, and headed home with their son, unsure about what the future held.

Like Stella, Diego had a Merry first Christmas--even with the NG tube.

Like Stella, Diego had a Merry first Christmas--even with the NG tube.

Rocio was on the same nauseating rollercoaster we had ridden. So many ups and downs. Exhilarating upswings of hope followed by crushing disappointments. Early on in our communications, at the very end of December, she told me, Diego was “not passing the 25 to 30 cc mark of drinking his bottle per feeding.” (There are about 30 cc’s or mls per ounce.) It was a tough time. But once in a while, he finished entire bottles–it took over an hour, but he was FINISHING them. And more progress quickly followed. One day, she told me that Diego took 90 mls in 45 minutes. He was showing that he could do it.

On February 4th, I received an unforgettable, elated email from Rocio. She told me that Diego had been without a tube for three weeks, and that he was thriving. In fact, he was gaining approximately one ounce  per day! Based on all the research I’ve done and my learning from the director of the Austrian tube weaning clinic, I know that this is amazing weight gain, especially so soon after the tube’s removal. Rocio was thrilled, and I truly felt her joy.

A GI doctor confirmed that Diego’s tube was gone for good. At this point, Stella had been without a tube for exactly one month, and it was also clear that her tube was gone for good. We’d done it.

Like Stella, Diego still had some difficulty swallowing. For us, thickening Stella’s formula did the trick. Last I heard from Rocio, Diego was going to have “ECI (Early Childhood Intervention) therapy because the swallowing study projected that he still needs to learn how to swallow better.”

I asked Rocio what she believed was the key to Diego’s success. Her answer was simple. First, Diego needed time to mature. Having been born so early, he didn’t have enough practice. (Babies learn to swallow in the womb.) Then, Rocio needed to get over her fear. Naturally, she worried that he would get sick or be undernourished upon the tube’s removal–even if a deeper part of her knew he no longer needed it. Lastly, she pointed to the removal of the tube as the most important aspect of his feeding progress. Rocio explained, “Pray and have faith. Babies will eat without [the tube] once they feel the need and understand that if they do not want to eat the regular way, they will have no other way to do so.”

With his tube days behind him, Diego is radiant and thriving!

With his tube days behind him, Diego is radiant and thriving!

Rocio fought for Diego. She faced incredibly challenging circumstances with Diego’s premature birth and extended hospital stay. She had to push just to take him home. Then she found the support and therapy he needed. Then she made the big decision to follow her instincts and take out the tube. This is a beautiful, healthy boy who has overcome some daunting odds. And he’s very lucky to have Rocio as his mother.

Whenever I think about Stella’s challenges with eating, that very trying time in our lives and how we overcame it all, I’ll think of Rocio and Diego, too.